Revista Interamericana de Psicología/Interamerican Journal of Psychology - 2007, Vol. 41, Num. 1 pp. 41-48
Ida Roldán1
Institute for Clinical Social Work, Chicago, USA
Abstract
Puerto Ricans have been disproportionately affected by the AIDS epidemic in the United States (CDC, 2000).
Although the Puerto Rican community is known to be family-centered, often their infected members have had
to face their illness without family and community support. A central assumption in this paper is that a
compelling cultural phenomenon exists in the Puerto Rican community when it is faced with HIV/AIDS. It is
strongly linked to the culture’s deep religious and spiritual roots that seem to take hold within the context of the
meaning Puerto Ricans give to HIV/AIDS. These roots have pushed the HIV and AIDS illness into the realm of
sin and evil. This culture’s inability to condone the shameful and sinful behaviors associated with HIV/AIDS,
the fear of casual transmission, and the fear of bochinche (malicious gossip) have driven many infected persons
to keep their diagnosis secret in order to avoid the inevitable rejection from family and community.
Keywords: Acquired Immune Deficiency Syndrome; stigma; culture; family; Puerto Rico.
El Estigma del SIDA en la Comunidad Puertorriqueña: Una Expresión de otro Fenómeno de Estigma en la Cultura de Puerto Rico
Compendio
La comunidad puertorriqueña en los Estados Unidos ha sido desproporcionadamente afectada por al epidemia
del SIDA (CDC, 2000). Aunque es una cultura centrada en la familia, frecuentemente sus miembros infectados
enfrentan su enfermedad sin apoyo de la familia o la comunidad. Una idea central de este trabajo es que existe un
fenómeno cultural importante en la comunidad puertorriqueña al enfrentar el VIH/SIDA. Está fuertemente atado
con las raíces culturales basadas en la religión y la espiritualidad que parecen controlar los significados asociados
al VIH/SIDA. Estas raíces han empujado al VIH/SIDA al reino del pecado y la maldad. La inhabilidad de esta
cultura de aceptar las conductas catalogadas como bochornosas y pecaminosas, el miedo al contagio, y el miedo
al bochinche (chisme malicioso) han hecho que muchas personas mantengan su diagnóstico en secreto para evitar
el rechazo de la familia y la comunidad.
Palabras clave: Síndrome de Inmunodeficiencia Adquirida; estigma; cultura; familia; Puerto Rico.
Although Hispanics comprise 14% of the United States
population, they account for 19% of AIDS cases diagnosed
since the beginning of the epidemic (Office of HIV/AIDS
Surveillance, 2004). Among Hispanics, Puerto Ricans are at
risk several times greater than whites and other Hispanics
throughout the country (Center for Disease Control [CDC],
2000). This data suggest that Puerto Ricans have been
disproportionately affected by the AIDS epidemic and are
experiencing a profound impact in their communities
throughout the country. One study shows that the Puerto
Rican infected person often struggles with the challenges
of his/her illness without the support of family and
community (Roldán, 2003). These figures also indicate that
current AIDS prevention programs are not reaching this
community. In order to help and serve this population, we
need to understand the cultural attitudes, values and beliefs
1
Dirección: E-mail - i.roldan@comcast.net
that influence the Puerto Rican community’s view of HIV/
AIDS and how these may affect the community’s response
to a member with AIDS.
Background
This paper is based on findings from a qualitative study
conducted with Puerto Rican people living with HIV/AIDS
(PWHA) in Chicago. The sample included 16 PWHA adults
and 3 PWHA partners (six females and thirteen males).
Because some participants only spoke Spanish, the informed
consent was provided in both English and Spanish. Special
consideration was given to the possibility that the interviews
could evoke discomfort or anxiety in some participants. In
the event this occurred, additional support and/or
intervention were offered. Interviews were semi-structured
and tape recorded. I was the primary interviewer which
necessitated a high degree of interaction with participants.
General questions during the interviews with participants
focused not only on their experience with HIV/AIDS, but
also how they experienced their family’s response to their
R. interam. Psicol. 41(1), 2007
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AIDS Stigma in the Puerto Rican Community:
An Expression of Other Stigma Phenomenon
in Puerto Rican Culture
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42
illness. Cultural attitudes, beliefs and values, and selfperceived acculturation levels were examined through topics
such as attitudes about homosexuality, drug use, premarital
and extramarital sexual relations; beliefs about HIV transmission;
attitudes about gender roles (machismo2 vs. marianismo3 ); and
level of interaction with others outside of their culture. Data
were collected, organized, and analyzed according to the
grounded theory method for qualitative research detailed in
Straus and Corbin (1998).
While the number of participants in this study is small and
represents a limited geographical area in Chicago, this research
aimed to capture depth and richness rather than broad
representation. This sample also represented the population
most at risk for HIV/AIDS in Puerto Rican communities – the
injection drug user. The findings provide important knowledge
about the experiences of the sample participants.4
Although this paper illustrates the psychological
transformation in Puerto Rican HIV/AIDS individuals
previously documented by Shelby (1992, 1995), it focuses
primarily on the cultural context within which this
transformation occurs. These individuals fiercely avoid the
effects of the stigma attached to their illness by keeping
their diagnosis secret. In my study, I found that often Puerto
Rican PWHA experience rejection and isolation by family
and community. The data suggests that there is an
interaction between Puerto Rican cultural values and belief
systems and the stigma Puerto Rican people attribute to
HIV/AIDS. This interaction is at the root of the breakdown
of the family system.
Flaskerud and Ruiz–Calvillo (1991) suggest that
traditional beliefs about the prevention, cause and treatment
of illness often attributed to peoples of Spanish,
Mediterranean, and Hispanic origins are those influenced
by the Hippocratic doctrine of humoral balance. The theory
of humoral balance proposes that health is a state of balance among body humors causing the body not to be
excessively dry, wet, hot, or cold. Religion, having faith,
regular confession, penance, and devotion to God, the Virgin,
and the Saints are believed to result in both spiritual and
physical well-being and good health. Hispanics place a high
value on spiritual matters. Therefore, classifying the causes
of illness into natural and supernatural categories is common
in their community. Natural illnesses are those caused by
exposure to cold, damp, and impurities, lowered resistance,
2
Machismo: System belief that men are superior and must always be
in control in all situations, including family life and sexuality.
3
Marianismo: System belief that women should be in a submissive
position and like the virgin Mary, always suffering and unselfish.
4
A more detailed description of the study’s methodology can be
found in Roldán, 2003.
and improper diet. Supernatural approaches to health
promote beliefs such as sinful acts can cause diseases, and
miracles performed by God can cure them. Pares-Avila and
Montano-Lopez (1994) caution that the accuracy of these
generalizations about cultural beliefs and values may vary
as a result of the acculturation process, individual personality
differences, or subgroups variations. In my clinical experience,
however, Hispanics who are more acculturated tend to retreat to
this way of thinking when under stress or facing serious illness.
I also caution the accuracy of the following generalizations
about Puerto Ricans but believe some understanding of the
Puerto Rican family is necessary to fully appreciate the lived
experience of the Puerto Rican PWHA. Providing the cultural
context is crucial because one cannot begin to understand the
contradictions observed in the Puerto Rican community when
it comes to HIV/AIDS without exploring the Puerto Rican’s
reality of HIV/AIDS and their explanatory model for this illness.
Puerto Rican families are characterized as people who,
in times of stress, turn to their families (Garcia-Preto, 1982;
Morales & Bok, 1992). The Puerto Rican family is described
as loving, caring, and nurturing. Family members are expected
to come to the aid of those members experiencing a crisis. In
terms of cohesion and adaptability, Puerto Rican families
encourage interdependence with emphasis on the group
rather than the individual. Families value unity, family ties,
and intense relationships. The family ensures safety,
protection, and caretaking for life as long as the person
remains within the cultural norms. Therefore, separations
are experienced with profound grief and reunions are cause
for celebration (Garcia-Preto, l982). Typically, Puerto Ricans
are also moralistic and traditional in family values. These
characteristics have endured despite family disruptions
caused by poverty, dislocations from rural to urban settings,
and migration between the United States and Puerto Rico.
Although the majority of Puerto Ricans in Puerto Rico
and the United States are Roman Catholics, spiritism is a
widespread belief system in Puerto Rican communities. Often
the beliefs regarding health and illness have roots in the
world of spirits and humors (Flaskerud & Ruiz-Calvillo, 1991;
Harwood, 1977; Hohmann, et al., 1990). Spiritism is a belief
system that serves as a religion which posits that the world
is inhabited by both good and evil spirits. Good spirits are
responsible for good luck and health. Evil spirits are
responsible for sickness and suffering (Delgado, 1979).
Illness and suffering may also be attributed to evil influences
exacting punishment to those who engage in sinful acts.
Morales and Bok (1992) and Garcia-Preto (1982)
emphasize that Puerto Ricans PWHA constitute a distinct
ethnic group. They also suggest that individuals who
engage in behaviors that put themselves at risk of contracting
HIV/AIDS such as drug abuse, prostitution, and
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AIDS STIGMA IN THE PUERTO RICAN COMMUNITY
R. interam. Psicol. 41(1), 2007
then faced with a developmental challenge which is an
anomaly in their culture. They are, perhaps for the first time,
pushed into more autonomous, independent functioning.
They have to face HIV/AIDS alone without the safety and
security of the family.
Development of the Theoretical Proposition
In the case of HIV/AIDS, the culture’s strong religious and
spiritual roots seem to take hold within the context of the meaning
Puerto Ricans give to this illness. These religious and spiritual
roots seem to have pushed the HIV and AIDS illness into the
realm of sin and evil and underlie the stigmatization of the HIV/
AIDS illness in this community. The inability to condone the
shameful and sinful behaviors associated with HIV/AIDS and
the fear of casual transmission have driven many of these families
to push away their infected members. I contend that the family’s
and the community’s negative response to their infected member
is due to the culture’s condemnation of behaviors associated
with HIV/AIDS.
Therefore, immense psychological stress is experienced
when someone in the Puerto Rican community is diagnosed
with HIV/AIDS. Risking the loss of family support puts the
Puerto Rican PWHA in a despairing situation. Feeling vulnerable,
frightened, confused, and ashamed, the infected person wishes
and expects to be surrounded by the safety and security of the
family. This wish only gives rise to angry and resentful feelings
because the Puerto Rican PWHA, expecting to be judged and
rejected by both family and community, is subjected to
suffering in silence.
As a result, living with HIV/AIDS makes unusually tough
demands on the Puerto Rican PWHA. Many are fending off
depressive, angry feelings which they believe can only
debilitate them further. “When you’re sick, it is necessary to
maintain a state of peace. Tension and stress makes one
depressed and affects the immune system.” In addition, the
mental energy that is required to defend against these
feelings is often overpowering. In their daily lives they must
cope with their mortality and their fantasies about death
without losing hope and giving into feelings of despair. For
most participants, beliefs about death were rooted in their
Catholic upbringing, and they often expressed a loss of
hope for redemption because of their sinful acts. PWHA
will not only face death alone and die in secret; they will
also be condemned to burn in hell (Roldán, 2003).
Because Puerto Rican PWHA cannot depend on the
customary support of the family, their support system may
just include his/her partner. It may or may not include
children, parents, or siblings. The fear of rejection and
humiliation has forced PWHA, and sometimes his/her nuclear family, to separate from extended family. They feel forced
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homosexuality are ostracized within the Puerto Rican
community (Ayala & Diaz, 2001). The negative attitude
toward these behaviors often leads to social denial, which
these authors believe makes prevention of at-risk behaviors
more difficult. Most importantly, the culture’s condemnation
of these behaviors forces the Puerto Rican person to keep
his/her diagnosis secret from family and community.
For the Puerto Rican PWHA, the HIV/AIDS experience
has its own distinct characteristics and qualities which are
unique to this culture. As mentioned earlier, Puerto Ricans
have been experiencing the devastating effects of the AIDS
epidemic for almost twenty years. Many have suffered
multiple losses going back at least two generations. The
primary mode of transmission of HIV/AIDS“I’ve been
surrounded by drugs since I was 16 years old. My older
brothers used and were dealing.” “I started doing drugs
when I was 9 years old. I used to go to shooting galleries to
get high. I’m 40 years old now.” “I’ve been an addict for 20
years. I have gone through several rehab programs, too.
I’ve tried to get off this stuff”. In this community has been
through injection drug use. In the mostly poor urban Puerto
Rican communities throughout the United States, the
pervasiveness of drugs and drug use appears to be tolerated
and accepted as a way of life. Several participants stated:
Families often express compassion toward the drug abuser
in their family and community.
Although HIV/AIDS has also become pervasive in their
communities, Puerto Ricans are responding in a way that
runs contrary to this culture’s strong values of close family
ties, unity, and intense relationships. Although families of
injection drug users have experienced much disappointment,
worry, and frustration with their drug addicted members,
they tend not to withdraw their support. Not until family
members contract HIV/AIDS does the family support
become threatened.
Roland (1988) describes a different organization of the
self which helps to illustrate how the experiential sense of
self is of a “we-self.” Self-esteem would be closely linked to
strong identifications with the reputation and honor of the
family and other groups. It is called the familial self. According
to Roland (1988), the familial self is a basic inner psychological
organization that allows women and men to function well
within the intimacy relationships of the extended family and
community. It involves intensely emotional intimacy
relationships where emotional connectedness and
interdependence is emphasized.
Given that the Puerto Rican family develops from a
relationship-centered culture, the HIV/AIDS crisis then has
transformed the relationship-centered culture dramatically.
It has left their infected members with extreme feelings of
disconnectedness, rejection and abandonment. PWHA are
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44
to function more autonomously in order to protect
themselves and their families from the stigma associated
with the HIV/AIDS illness. Thus, keeping the secret is of
paramount importance.
Due to the Puerto Rican community’s attitude toward HIV/
AIDS, facing the reality of their illness is complicated by a very
strong code of secrecy. Underlying this code of secrecy is the
fear of bochinche (malicious gossip). Bochinche is perceived
as harmful, intrusive, and destructive; yet it is a part of the social
fabric of the Puerto Rican community. It is often fueled and
driven by misinformation and fear. Statements common among
participants were: “They find out somebody is HIV and they
start talking.” “They have nothing good to say.” “Shit,
you’re still human.”
Avoiding bochinche requires one to expend much
psychic energy because of the fear of being subjected to
the humiliation, shame, and rejection of others. In many
ways, fear of bochinche seemed to organize the lives of the
participants in my study as they continually struggled to
maintain their diagnosis secret from loved ones and
community. It is a daily preoccupation and worry about
what others may think or say. Keeping the diagnosis secret
functions as a self-protective measure against the destructive
forces of bochinche. As one participant stated, “My family
thinks he has cancer. I will keep his secret until he dies. I
will bury his secret with him.” In addition, there is the fear
that the family will become the target of bochinche. This is
the driving force behind keeping the HIV/AIDS diagnosis
secret. A participant stated, “My parents don’t know. Don’t
want to unnecessarily cause them trauma.” This concern
overrides any anxiety PWHA has about himself/herself and
is the source of much distress in this community. For
instance, one participant declared, “You know Puerto
Ricans; they’re bochinchosos (gossipers). Make a
mountain out of a mole hill.” Another participant stated,
“We don’t tell anyone [about being infected] to avoid
bochinche and have people drag us through the mud.”
Bochinche appears to be a necessary evil in the Puerto
Rican community in Chicago and on the island as well. It
symbolizes the intense social interactions this population
enjoys and dreads. Bochinche seems to be a form of
communication which keeps people involved with one
another. There is a sharing of life’s joys and sorrows with
others in the community. As a result, people respond by
offering help and comfort. Bochinche also seems to be
experienced as something invisible with supernatural
qualities and powers. Everyone fears it. Yet, everyone does
it. It is feared because in matters that are considered evil,
bochinche rears its malevolent head. It brings with it
destruction and shame
Bernal y Del Rio (1982), a psychoanalyst practicing in
Puerto Rico, attempts to dynamically explain bochinche.
He suggests that the geographical closeness, the extended
family, and the intense social contacts of the Puerto Rican
people are what make the psychoanalytic situation special
in Puerto Rico. Given these features, he reports that any of
his analysands “can get for the asking a more-or-less
benevolent but thorough biography of mine” (Bernal y Del
Rio, 1982). However, when it comes to HIV/AIDS, PWHA
and his family struggle with the fear that a malevolent
biography (bochinche) would be spread throughout the
community. The fear is rooted in the inescapable shame
and humiliation bochinche will bring to PWHA and his/her
family should the diagnosis become public knowledge. It is
also the motive behind the collective secrecy in the
community (Roldán, 2003). Fimbres (1993) refers to how the
Hispanic family’s fear of not only what the neighbors will
say and even do often prevents them from acknowledging
a member has died due to HIV complications. Bochinche
then becomes a metaphor for the AIDS illness. It is almost
as if the greater fear is of becoming infected with bochinche.
There is a sense that one is helpless from the onslaught
of bochinche. PWHA express anger and frustration about
having to keep their illness a secret. They overwhelmingly
blame an external source for their community’s struggle with
the disease. Bochinche is also blamed as the source of the
Puerto Rican community’s ignorance regarding HIV/AIDS.
Although there is much available information about AIDS,
the Puerto Rican community is still greatly misinformed.
Because misinformation is fueled by bochinche, when it
comes to HIV/AIDS the Puerto Rican community reacts
with fear and panic. Therefore, PWHA feels helpless when
faced with the possibility of someone finding out his/her
secret.
PWHA experience their family’s revulsion and fear but
do not feel these feelings can be openly expressed. They
cannot tell their families how it feels to be treated “like a
leper”. Another participant lamented, “They say and do
stupid things. They’re still afraid of contracting the disease.
I have seen a lot of ignorance when it comes to AIDS.
People turn away. It’s sad”. There seems to be some great
prohibition about speaking and expressing these feelings
to family members. In fact, there is evidence of a giant
collusion among family members. Perhaps this is due to
cultural inhibitions regarding taboo subjects such as sex or
behaviors considered sinful (Marin, 2003). Also, open
communication related to topics such as feelings of loss
and shame seems to be discouraged. Bardach (1995)
similarly found that when confronted with the illness of
AIDS, open communication within the Hispanic family seems
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AIDS STIGMA IN THE PUERTO RICAN COMMUNITY
Conclusion
Rolland (1994) suggests that a family characteristic which
is generally viewed as dysfunctional under certain
circumstances can be adaptive during a health crisis.
Systems theory also views a family’s response to stressors
or crises in terms of its coping and adaptation abilities. A
balance between cohesion and adaptability allows family
members to manage and resolve hardships without losing
their sense of independence and connection to their families
(Walsh, 1982).
There is an assumption in the statement above which
alludes to the Western value of maintaining independence
while remaining connected to family. This statement does
not reflect a unitary Hispanic family systems model or unitary
Puerto Rican family systems model. However, it is helpful to
look at how some of the family systems concepts compare
to what I found in my study. Looking at the Puerto Rican
family from a systems perspective, one can identify a
characteristic which could enhance their ability to cope with
a health crisis. That characteristic is cohesion. Rolland (1994)
also suggests that family adaptability is a crucial
characteristic for well-functioning family systems. Family
adaptability or flexibility is essential in facing the challenges
of the more progressive, relapsing illnesses such as AIDS.
R. interam. Psicol. 41(1), 2007
However, when it comes to HIV/AIDS, the Puerto Rican
family is lower in both cohesion and adaptability making it
more vulnerable when facing HIV/AIDS.
The Family Systems-Illness Model that Rolland (1994)
developed also suggests that a cohesive family is more
likely to be able to cope and adapt in a health crisis. This
model views illness as dynamic and with specific phases.
Each phase has its own psychosocial demands and
developmental tasks which present the family with different
challenges. Rolland (1994) suggests that not solving the
phase-related tasks of the three major phases (crisis, chronic,
and terminal) can jeopardize the coping process of the family.
According to this model, the crisis phase begins before the
actual diagnosis. The individual or family has a sense
something is wrong. This is where the Puerto Rican family
remains trapped. Although Puerto Rican PWHA transition
onto the other phases and tasks of living with HIV/AIDS,
their families do not.
According to Rolland (1994), in the crisis phase proper,
there is a sense of the family pulling together. The family
group effort is at a premium during this phase. However, the
Puerto Rican family seems not to enter into this experience.
My data suggest that the Puerto Rican family may not be
able to enter into “the pulling together” experience because
of their beliefs about the causes of HIV/AIDS. Rolland (1994)
found that a family’s belief about the causes of the illness
also organizes their experience and mirrors their belief
system. These core beliefs shape the family’s reaction,
response and coping strategies.
Similarly, the Puerto Rican family’s core beliefs about
the causes of HIV/AIDS and illness in general shape their
reaction and give rise to the complicated feelings and fantasies which are culturally derived. These beliefs are what
drive the Puerto Rican family to act uncharacteristically
distant and un-nurturing when faced with HIV/AIDS. The
shame associated with the HIV/AIDS illness interferes with
the Puerto Rican family’s ability to face the crisis phase
developmental tasks that pull the family together. Using
this model to understand the Puerto Rican family’s response
to HIV/AIDS, one might say that the Puerto Rican family’s
unfinished business from the crisis phase blocks their
movement onto the other phases. Since many Puerto Rican
PWHA do not disclose their diagnosis to their families, their
families remain stuck in the stage where everyone has a
sense something is wrong but no one is talking about it.
In addition, the Puerto Rican community’s strong antihomosexual attitudes affect the family’s response to PWHA.
These attitudes have religious roots which are connected
to behaviors considered sinful. They are also connected to
the gender roles and social scripts ascribed to men
[machismo] and women [marianismo] in the Puerto Rican
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to break down and instead a “conspiracy of silence” is
adopted.
This lack of communication often leaves PWHA feeling
isolated and abandoned. Although families do not cut off all
contact with the infected person, interactions tend to change
dramatically. Many participants interviewed have been
subjected to countless painful experiences of rejection by
immediate family, friends, and strangers. One participant
stated, “They don’t know the facts about the disease, so I
don’t know if they’re going to have a separate glass or
plate for me.” Another infected participant added, “Since I
found out I had the virus, I isolate myself. I don’t visit family
or friends like I used to.” The intense connection and
intimacy PWHA enjoyed within the family prior to disclosing
his/her HIV/AIDS diagnosis no longer exists. PWHA feels
his/her family’s anxiety and fear when in their presence.
Even customary ways of greeting one another are modified.
No longer can they enjoy the physical contact so casually
offered to other members of the family. These experiences
lead to feeling very vulnerable, and in order to protect
themselves from further hurt, PWHA often choose to
distance themselves from their family. Although my study
data (Roldán, 2003) suggest that participants did not
experience out-right rejection by family, these experiences
invariably left them feeling unwanted.
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culture. Machismo is a complex phenomenon which
emphasizes male superiority and the need for the man to
present as masculine and dominant. Men are responsible
for the family’s safety, well-being and the defender of its
dignity and honor. It also involves cultural values such as
courage and fearlessness. This machismo code makes it
difficult for men to accept help or demonstrate vulnerability.
Marianismo is the female counterpart of machismo. It is based
on the worship of Mary who is both virgin and Madonna in
the Catholic religion. The term connotes the chaste and
submissive female whose purpose is to bear children and
be self-sacrificing, especially when it comes to her husband
and family.
Consequently, behaviors associated with HIV/AIDS
such as homosexuality and prostitution tend to be viewed
as impure, sinful and evil. Therefore, HIV/AIDS is viewed as
a punishment from God for sexual transgressions. This belief
would undoubtedly affect how others respond to PWHA.
As mentioned earlier, culturally based beliefs regarding
health and illness have roots in the world of spirits and
humors. If sickness and suffering is believed to come to
those who engage in sinful acts, HIV/AIDS then afflicts
those who have been sinful and impure. Not so explicit is
the fear that PWHA is judged homosexual. Becoming the
target of bochinche could then put one at risk of being seen
as homosexual, especially since homosexual behaviors are
still thought to be strongly linked to HIV/AIDS. Thus, the
drug user living with HIV/AIDS and his family struggle to
keep his/her illness secret for fear of being thought of as
homosexual. In the Puerto Rican community, being perceived
as homosexual is far more shameful than having HIV/AIDS.
“Sharing needles, that’s how I got it. I’m not a fag. God,
people talk.” Another participant stated, “Families worry
about what others will say. Before you know it, the whole
‘barrio’ has judged you, diagnosed you and buried you.”
The religious and spiritual beliefs which are central to
the Puerto Rican individual’s reality strongly influence the
Puerto Rican’s attitude towards prostitution, homosexual
activity, and HIV/AIDS. These religious and spiritual beliefs
often stimulate PWHA’s fantasies about retribution. It is as
if HIV/AIDS represents the guilt and shame of all past sins.
The fear is that bochinche will seal their damnation because
this time they have gone too far. HIV/AIDS is the stamp on
“the ticket to hell”. They are beyond redemption. An
uninfected participant who cared for her mother living with
AIDS described this painful and conflicting experience, “My
grandmother would be angry with my mom for being
infected and call it the Demon’s disease. She’s very Catholic.
Maybe that’s where that demon stuff came from. But it would
break my mother’s heart to hear that.” Rejection is
understood in terms of retribution. Another participant
stated, “They reject us because the Bible says this or
that. It’s a sin.”
It is also believed that an imbalance of body humors
can cause illness. This imbalance can occur when
impurities enter the body. These impurities can be
transmitted through body excretions, saliva, and
coughing. In the case of HIV/AIDS, what seems to be
coughed or expelled is not a germ. It is instead something
impure which seems to be equated with bad or evil.
Therefore, if PWHA are viewed as evil, full of impurities,
and culpable, one can begin to understand the intense
fear this community has of HIV/AIDS. One can also
understand why families continue to deny a member has
been afflicted with HIV/AIDS. More significantly, we can
appreciate the tremendous psychological stress
experienced by the infected person as he/she faces the
fear of being rejected and abandoned by others.
As PWHA reflect on their future and the prospect of
facing death, they experience a combination of
resignation, anger and fear. Sadness also emerges as they
look back at the people they have lost. Loss of potential,
poor choices, shameful acts, and death before fulfillment
give rise to much regret for PWHA. “It hurts me when I
think about all the people I’ve hurt.” They also live with
a sense of impending doom. “For us [Puerto Ricans] if
you have HIV/AIDS you’re going to die. It’s a matter of
time.” Consequently, there is a wish to avoid talking about
the future; yet intrusive thoughts about death and dying
are a daily psychic battle. Death means not knowing until
Judgment Day if one’s sins will be forgiven or if one will
be condemned to hell. Therefore, suffering does not end
with death. Living in fear of dying a horrific death only to
be also punished after death triggers angry and helpless
feelings which often result in fantasies about suicide as
a way of ending this life’s suffering. One participant
despaired, “Before it gets me I will take an overdose.”
Another participant stated, “My brother gets upset when
I tell him that when the time comes I’ll take my life.” It
is important to note that what is underlying the anger is
the fear of dying alone without family support and
comfort. Added to that is the shame associated with the
wish to have others take care of them.
Turning to religion appears to free some PWHA from
the despair of not knowing what will happen in the end.
While not necessarily religious, the belief in a higher
power and life after death are strongly held beliefs by
most of the PWHA in my study (Roldán, 2003). For many
participants, drugs were a way to escape the painful
realities of their lives. Although some PWHA did turn
R. interam. Psicol. 41(1), 2007
AIDS STIGMA IN THE PUERTO RICAN COMMUNITY
R. interam. Psicol. 41(1), 2007
Puerto Rican community serves as an extended family to
most Puerto Rican immigrants and that many rarely come
in social contact with communities outside of their own,
feeling accepted and respected in one’s community is a
matter of survival.
Lastly, I assert that HIV/AIDS prevention programs
have failed the Puerto Rican community because they
have not tailored interventions that are consistent with
the Puerto Rican culture’s values and beliefs. Programs
must validate Puerto Rican PWHA’s cultural experience
and encourage behavioral and attitudinal changes within
that context. That is, families cannot pull together and
respond in a typical way if they are afraid for their own
physical and emotional well being. Recognizing and
addressing this community’s strong anti-homosexual
attitudes, beliefs about health and illness and the roots
to the stigma attached to HIV/AIDS is critical to any
effective HIV/AIDS prevention program in the Puerto
Rican community.
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47
ARTICULOS
back to drugs as way of coping with fear and anxiety,
some turned to their faith to ask for forgiveness in the
hope they will be redeemed as they face the painful
realities of their illness.
Also, fear of bochinche has had a profound impact
on the way Puerto Rican families are responding to HIV/
AIDS. Fear and bochinche are inextricably connected.
Beliefs about the causes of HIV/AIDS fuel the fear of
bochinche which drives the family and PWHA away from
each other. Fear of bochinche is a cultural phenomenon
which functions as a metaphor for the HIV/AIDS illness
in the Puerto Rican community. The greater fear is of
becoming infected with bochinche which will destroy
PWHA and his family should his/her diagnosis be
disclosed. Fear of bochinche also serves another
function. It pushes the HIV/AIDS illness into the
supernatural world that is malevolent and helps to explain
the contradictions among cultural standards (Harwood,
1977). Bochinche allows family members and the
community to distance themselves from the problem. As
one participant said, “They are in the dark – ignorant.”
In summary, a central assumption in this article is that
a compelling cultural phenomenon exists in the Puerto
Rican community underlying the stigmatization of HIV/
AIDS. It is strongly linked to the culture’s deep religious
and spiritual roots that seem to take hold within the
context of the meaning Puerto Ricans give to the HIV/
AIDS illness. These roots have pushed the HIV and AIDS
illness into the realm of sin and evil. This culture’s inability
to condone the shameful and sinful behaviors associated
with HIV/AIDS, the fear of casual transmission, and the
fear of bochinche have driven many PWHA to keep their
diagnosis secret.
Most still believe that HIV/AIDS is easily transmitted,
that it is contracted when one engages in sinful behaviors
such as homosexuality or prostitution, and that it is a
death sentence. Because there is enormous shame and
dishonor associated with the HIV/AIDS illness, families
tend to respond uncharacteristically toward their infected
member. Families who ordinarily value family ties, unity
and intense relationships break down. They reject their
infected member because now this member has crossed
the threshold of what is acceptable and tolerated in this
culture.
If HIV/AIDS is viewed as a punishment from God for
sexual transgressions, the devastating effects of the
stigma attached to HIV/AIDS in this community put
PWHA and his family at high risk of being ostracized,
rejected and humiliated should their illness be disclosed
to the broader community (bochinche). Given that the
IDA ROLDÁN
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Ida Roldán (United States). Graduate of and guest lecturer at the Institute for Clinical Social Work in Chicago.
She has a private practice in Oak Park, Illinois serving adolescents and adults. She has lectured extensively on
“The Impact of HIV/AIDS on the Puerto Rican community in Chicago” and “The Importance of Culturally
Competent Practice”. E-mail: i.roldan@comcast.net
R. interam. Psicol. 41(1), 2007